TOaksMom

I also posted this on the PANS/PANDAS forum: http://latitudes.org/forums/index.php?showtopic=22272 There is a new Feb. 2014 study from Lehigh University in Pennsylvania: (http://www.ncbi.nlm....pubmed/24257436) that says: "Two experiments examined probiotic pretreatment (Lactobacillus rhamnosus GG) on obsessive-compulsive disorder (OCD)-like behavior induction by RU 24969 in BALB/cJ house mice. In the first experiment, two groups were defined by their daily pretreatment by oral gavage of either (a) L. rhamnosus (1×10⁹ CFU/day) or b. the saline vehicle. Both a 2- and 4-week probiotic pretreatment attenuated OCD-like behavior induction (increased perseverative open-field locomotion, stereotypic turning, and marble burying) relative to saline pretreatment. Experiment 2 re-examined the 2-week probiotic pretreatment while also comparing it to a 4-week fluoxetine pretreatment. Again, groups were defined by daily pretreatment of either (a) L. rhamnosus for 2 week, b. the saline vehicle for 2 weeks, or c. fluoxetine (10 mg/kg) for 4 weeks. Pretreatment by either L. rhamnosus or fluoxetine blocked the induction of OCD-like behavior compared with saline pretreatment. Thus the 2-week probiotic pretreatment was again effective. Although side effects of fluoxetine or L. rhamnosus on androgen-dependent behaviors could not be demonstrated, L. rhamnosus treatment appeared comparable to fluoxetine treatment in attenuating mouse OCD-like behaviors." Lactobacillus rhamnosus GG is Culturelle: Generic Name: lactobacillus rhamnosus GG Brand Name: Culturelle DS, Culturelle HS http://www.drugs.com...turelle-ds.html https://web.archive....relle_vs_others Lactobacillus rhamnosus GG appears to only be sold as Culturelle in the US: Lactobacillus rhamnosus GG (ATCC 53103) is a strain of L. rhamnosus isolated in 1983 from the intestinal tract of a healthy human being; filed for patent on 17 April 1985, by Sherwood Gorbach and Barry Goldin.[2] (The 'GG' derives from the first letters of their surnames').[3] The patent refers to a strain of "L. acidophilus GG" with American Type Culture Collection (ATCC) Accession No. 53103; later reclassified as a strain of L. rhamnosus. The patent claims the L. rhamnosus GG (ATCC 53103) strain is acid– and bile–stable, has a great avidity for human intestinal mucosal cells, and produces lactic acid. In 1990, Finnish company Valio launched Valio Gefilus, a family of products containing Lactobacillus rhamnosus GG (ATCC 53103), for which they also use the trademark LGG.[24] Valio has licenced rights to LGG to several companies, including Amerifit Brands in the United States (Culturelle), FrieslandCampina in the Netherlands (Vifit),[25] Oriola in Finland (Gefilus and LGG), and Dukat in Croatia (LGG).

There is a new Feb. 2014 study from Lehigh University in Pennsylvania: (http://www.ncbi.nlm.nih.gov/pubmed/24257436) that says: "Two experiments examined probiotic pretreatment (Lactobacillus rhamnosus GG) on obsessive-compulsive disorder (OCD)-like behavior induction by RU 24969 in BALB/cJ house mice. In the first experiment, two groups were defined by their daily pretreatment by oral gavage of either (a) L. rhamnosus (1×10⁹ CFU/day) or b. the saline vehicle. Both a 2- and 4-week probiotic pretreatment attenuated OCD-like behavior induction (increased perseverative open-field locomotion, stereotypic turning, and marble burying) relative to saline pretreatment. Experiment 2 re-examined the 2-week probiotic pretreatment while also comparing it to a 4-week fluoxetine pretreatment. Again, groups were defined by daily pretreatment of either (a) L. rhamnosus for 2 week, b. the saline vehicle for 2 weeks, or c. fluoxetine (10 mg/kg) for 4 weeks. Pretreatment by either L. rhamnosus or fluoxetine blocked the induction of OCD-like behavior compared with saline pretreatment. Thus the 2-week probiotic pretreatment was again effective. Although side effects of fluoxetine or L. rhamnosus on androgen-dependent behaviors could not be demonstrated, L. rhamnosus treatment appeared comparable to fluoxetine treatment in attenuating mouse OCD-like behaviors." Lactobacillus rhamnosus GG is Culturelle: Generic Name: lactobacillus rhamnosus GG Brand Name: Culturelle DS, Culturelle HS http://www.drugs.com/mtm/culturelle-ds.html https://web.archive.org/web/20130906045350/http://culturelle.com/about_culturelle/culturelle_vs_others Lactobacillus rhamnosus GG appears to only be sold as Culturelle in the US: Lactobacillus rhamnosus GG (ATCC 53103) is a strain of L. rhamnosus isolated in 1983 from the intestinal tract of a healthy human being; filed for patent on 17 April 1985, by Sherwood Gorbach and Barry Goldin.[2] (The 'GG' derives from the first letters of their surnames').[3] The patent refers to a strain of "L. acidophilus GG" with American Type Culture Collection (ATCC) Accession No. 53103; later reclassified as a strain of L. rhamnosus. The patent claims the L. rhamnosus GG (ATCC 53103) strain is acid– and bile–stable, has a great avidity for human intestinal mucosal cells, and produces lactic acid. In 1990, Finnish company Valio launched Valio Gefilus, a family of products containing Lactobacillus rhamnosus GG (ATCC 53103), for which they also use the trademark LGG.[24] Valio has licenced rights to LGG to several companies, including Amerifit Brands in the United States (Culturelle), FrieslandCampina in the Netherlands (Vifit),[25] Oriola in Finland (Gefilus and LGG), and Dukat in Croatia (LGG).

Studies I had read said the dose for L-Histidine was 2-3 grams a day. Last night my daughter took 1800mg (three 600mg capsules) of the Montiff L-Histidine. When I asked her tonight about it she said it made her feel very crazy and didn't want to take it again. There can be that much histidine in a few chicken eggs. I wish this epigenetics was easier.

It has been awhile since I've visited and now that I have this post has me intrigued as the mother of a 16 yo daughter who vocal and motor tics. We've been doing CBT once every week for the past 9 months for the OCD and the therapist had me convinced that the tics were all OCD related. Now I'm not so sure. The full new study in the Neuron journal can be viewed here. Just X out of the download prompt. http://www.academia.edu/4581915/Histidine_decarboxylase_deficiency_causes_Tourette_syndrome_parallel_findings_in_humans_and_mice._Neuron_81_2014_77-90 The mutation in the histidine decarboxylase gene (HDC) is W317X. I haven't a clue how to figure out via the 23andMe data how to tell if you have it. Nothing comes up in a search on their site. I put in a support request asking about it. Google doesn't give much about it either except for the studies on it. I browsed my family's HDC gene SNPs and my son, husband, and myself are all the same but my tic'g daughter had several homozygous differences we didn't have so I Live Wello'd them and they were HDC rs2238292 T TT +/+ HDC rs2853766 T TT +/+ HDC rs854151 G GG +/+ HDC rs854158 G GG +/+ HDC rs860526 T TT +/+ Does anyone know what to do when you have a histidine decarboxylase deficiency? There's not a lot of info on that. One of the articles said that although this study helps figure out what is wrong it will take several years for them to figure out how to address it. She has taken an L-Histidine supplements in the past and we both remember that it seemed to help but we didn't stay with it long enough. We have also tried the H1 and H2 blockers. I seem to remember that either an H3 or H4 blocker seemed like it would be more helpful but they weren't available.

I'm updating this post to keep the continuity. My daughter got the $600, 10 week long Advanced Laboratory Services Lyme culture test and her July 30th report said she had growth and we have the microscope photos of the spirochetes from them but I can't figure out how to add the link to a photo of them. If someone could tell me how I will. In the last post to this, Lfran had let me know about the band 58 being significant for European Lyme which is Borrelia garinii and Borrelia afzelii. Borrelia burgdorferi is the more recent US Plum Island / Lyme, Connecticut Lyme. So after getting the positive growth culture results I had asked Advanced Labs what the specific species we had and they said: A positive result indicated that ONE of the following species is present in your culture: Borrelia burgdorferi, Borrelia garinii, or Borrelia afzelii. You can, however, choose to perform a Monoclonal Antibody Add-On for $300.00. This will stain ONLY Borrelia burgdorferi. If this is an option you would like to consider, please let me know ASAP, as we only keep the culture for a week after the results are reported. So if you want to know the exact species, you need to indicate it on the lab order when the test is submitted. It will cost more but you can't get the specific results after. We did not do this. The ADL Lyme culture test requires 4 larger than normal tubes of blood. Current Lyme cases can get a positive result after 10 days/2weeks and they report everyone at 10 days, in my daughters case it was non-conclusive. Then they put the culture away for 8 more weeks and they do not report on it until that time has elapsed. Seeing the microscope pictures of the Lyme spirochetes that were most likely cultured from cysts is very humbling despite symtoms and all the Western Blot IGM/IGG crap. Although I've been suspecting the Lyme neuroborreliosis diagnosis as an explanation for my daughter's bizarre neuro issues, the actual culture test results have made one of our non-believer docs finally accept it. He had ordered every non-Igenex Lyme test possible and only believed the negative results instead of the positive IGM Igenex Western Blot we originally gave him until he saw the positive Lyme culture test. Something to consider. I got shell shocked from the somewhat negative replies on this post saying that docs will only treat real symptoms when there's an Igenex positive Western Blot result and I stopped reading the forum. That wasn't my point and I wasn't as interested in treating as I was in understanding what was wrong with my family. I had started this post because I believed my daughter's and son's positive IGM Igenex WBs but my husband's IGG which is obviously a lot older but still positive was questioned by the same doc that now is digesting my daughter's positive Lyme culture results. Our doc had told us that he unequivocally did not think my daughter had Lyme and was instead willing to treat her neuro issues with psych meds even though he is not a psychiatrist. It's not like we hadn't gone through the PANS/PANDAS diagnosis with Dr. T. which we did and we did the antibiotics which had only made positive, significant results. But unfortunately we never took the antibiotics long enough in the past to maybe make a real difference and our current real LLMD took a 3 week vacation shortly after getting the positive culture results so we are still waiting to meet with her. Our non-believing wannabe LLMD doc has my daughter taking 100mg of minocycline twice a day. Based on my family's autoimmune symptoms, I think we may have had the European band 58 Lyme for several generations. But I have personally pulled out more engorged ticks from my scalp than I can remember when I lived in Arkansas. My DD16 has also spent several prior summers in Arkansas although she can't remember any tick bites. She could have been re-infected which triggered her current symptoms but she had so many symptoms since she was born too. She also had the MDL, Medical Diagnostic Laboratories battery of tests and is positive for anaplasma, mycoplasma pneumonia, chlamydia pneumonia, herpes 1, 2, and 6, cytomegalovirus, Epstein-Barr EBNA-1 and EA-D. Neuro inflammation / neuroborreliosis from congenital Lyme and the resutling neuro issues started early in life for my daughter and son. Looking back, fussy eating from the get-go, sibling interactions, irritability, so many early signs that just kept getting worse. We've done the genetic tests and there are issues where my daughter doesn't deal with chronic illness as well as others might and has detox issues. I'm sad that so many generations have been born with way too many bacteral and viral infections. I'm glad that the current testing is getting better and I hope that in the future pregnant mothers and newborns are routinely tested so they know what they are dealing with early on. Unfortunately though big pharma will probably be keeping us from easily finding out the real reasons behind our symptoms for a lot longer. Although my kids have had issues since they were born, all of our symptoms got so much worse after we got our electric smart meter installed about 2 years ago. We've been without our smart meter for about 6 months now and feel a lot better. The installer came to our door to be greeted by me in my pajamas looking half dead and told me that they would be replacing the smart meter with a non-networked but newer digital meter instead of the old analog type like we had before. I explained to him that we had very bad Lyme symptoms and that whatever he needed to do would be better than the current smart meter. After he left I looked at the new meter and it was the old non-digital kind so I guess he had that as option and felt sorry for me. Radiation from smart meters, wi-fi, DECT phones, cell phones, improper house wiring, etc. supposedly makes our bacterial and viral infections worse. I personally can attest to that. In addition to getting the smart meter replaced with an analog one we got rid of our DECT wireless house phones and replaced them with the old wired kind and disconnected the wi-fi router and only use wired internet. Simple steps that help.

It's been awhile since I've posted and I came to the site to search for something when I noticed your post. Here's some of my observations with my daughter. We recently put my DD16 back on the SSRI Luvox / fluvoxamine for her debilitating OCD and it is helping a little. My DH has been on 20mg of Prozac a day for 20 years and like most people I had always thought of the serontonin reuptake properties doing its thing when taking SSRIs but recently found it may instead be their brain anti-inflammatory effects that are helping to relieve the issues. Here is a short abstract that explains it: http://www.ncbi.nlm.nih.gov/pubmed/22251606 About a year ago Dr. T. had my daughter try high dose ibuprofen to help with the brain inflammation but it did nothing to help her but there are so many who it does help. Like the abstract says, there are different reasons causing the brain inflammation. We are taking Luvox because the doctor said it is the best for OCD but maybe a different SSRI would have a better anti-inflammatory effect my daughter's specific inflammation. I guess we won't know unless we try. Like SSRI's and ibuprofen helping some but not others, NAC has also had that effect on our kids. I've tried NAC twice with my DD16 in the past and the first time about 9 months ago she had a very bad reaction to it with a significant worsening of her nuero symptoms after only a couple of days so we stopped it. A couple months ago we tried it again and it had no effect good or bad. Here is an interesting description from David Wheldon about NAC and Chlamydia pneumoniae: It has many beneficial effects; perhaps the most surprising is the likely ability of this molecule to destroy chlamydial elementary bodies. It is also a powerful antioxidant, and replenishes intracellular glutathione. It may also be effective in inactivating fungal gliotoxins. These properties are reviewed below. Here is the link: http://www.davidwheldon.co.uk/NAC.html David helped reverse his wife's MS symptoms by treating her CPN infection. My DD16 has had the battery of MDL tests a few months ago and she was just IGG positive for CPN. Perhaps 9 months ago she was IGM positive for CPN and the couple days on the NAC caused a lot of commotion and inflammation.

Thank you for your replies. All four of us have tons of symptoms. Sorry, I didn't mean to imply that we did not. I started with symptoms about 30 years ago, my husband about 20 years ago. My kids have had on and off symptoms since birth but more severe symptoms when they started puberty. A problem with the two local wannabee LLMDs we have seen so far has been the approach to band-aid the specific symptoms with drugs that only mask the symptoms. From my experience with in-network insurance LLMDs, I think they do not want to jeopordize their status with the insurance companies by doing anything they would question as being unconventional. They also have you come into the office very frequently for quick visits which appears to be to charge the insurance co. and they always have available appts. If you ask for anything, they will give it to you but unlike a real LLMD, they do not have an experienced approach to treat lyme & co or any infectious diseases and seem afraid of it. Both of the LLMDs we've seen were ILADs referred. We've had $4000 of Igenex tests done for Lyme and co-infections but not the band 30-31 test. When I saw the charge on my credit card and asked the LLMD why he didn't tell me how much it was going to cost he replied that he didn't know it would be so expensive. The only postive results were the WBs I noted above. My kids are going to see Dr. Chitra Bhakta soon, a real non-insurance LLMD who is about 80 miles away. She is having my antibiotic free son get the $500 Advanced Labs Lyme culture test done which seems like a great test for chronic Lyme and I wish we would have done that one after the postive WBs instead of all the extra Igenex PCR lyme tests. I also want them to see Dr. Nancy Mullan for their methylation/psych issues who is close by but I'm waiting for our Yasko and 23andMe results to come in first. Our kids getting treatment is more important than us right now. After our current doctor telling my already skeptical husband he doesn't have Lyme there's no way he will go see another doctor about it. I am not hung up on it being congenital or not. It is what it is and in retrospect, there are a lot of symptoms and illnesses both kids had when they were infants and toddlers that point to having been born with some not so nice microbes. I'm grateful for what little understanding I have about what might be wrong with us compared to not knowing and not doing anything about it. In writing my disjointed post I was hoping to see if anyone could see anything unusual with our WB results or can tell if the bands are picking up something besides Lyme. We all have bands 31, 39, and 58. The kids also have 34 and 83-93. My DD and I both have 18. My DS and DH both have 66. Both kids have very high IGG mycoplasma pnuemonia titers as well but have never had lung pneumonia or any kind of lung/asthma issues.

Thank you very much Shelia for hosting this invaluable forum, adding the new PANS label, and upgrading the site. I'd like to remind everyone that Swedo's 2012 updated paper: From PANDAS to PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) clearly states in figure 1 that "Lyme, mycoplasma, and others?" are in the same infectious triggers category as Group A Streptococci (PANDAS). http://intramural.nimh.nih.gov/pdn/PANDAS-to-PANS2012.pdf Lately there seems to be less strep only PANS children and it is great that our resources can be grouped together now which will help us reach our goal of healing our kids.

My DH and I recently got tested for Lyme via Igenex WBs. Our Blue Cross insurance in-network ILADs referred but non-ILADs member psuedo LLMD who makes it very obvious once you are an established patient that he doesn't want to treat Lyme patients but accepts them anyway told my DH that he doesn't have Lyme even though his WB IGG was Igenex positive. So now my DH has a Dr. confirming that I'm nuts. The Dr. also told me not to worry that I didn't give DS and DD Lyme congenitally. Both DS and DD have Igenex positive IGM WBs and he has not said whether or not he thinks they have Lyme but after numerous visits he still only wants to treat the symptoms with beta blockers and psych meds and always says we'll address the Lyme at the next visit. My WBs are negative but I do have bands and I got my first tick bite over 30 years ago and we attempted to remove it using a lit match. I have had numerous engorged ticks in my hair over the years. My DH's IGG is positive and my IGG has the most bands which points to us being chronic. My DH can't remember any ticks. My DS and DD's IGM is positive. My DD has been on and off antibiotics for over a year but my DS has never had antibiotics since he was a toddler. My DS and DD have never had any ticks that have attached to them that they have had to pull out. Any comments on our WBs would be very much appreciated. DH 52, married to me 30 years: IGM: Negative: 18 - 23-25 IND 28 - 30 - 31 IND 34 - 39 IND 41 ++ 45 - 58 - 66 + 83-93 - IGG: Igenex Positive: 18 - 23-25 - 28 - 30 - 31 + 34 - 39 IND 41 ++ 45 - 58 + 66 - 83-93 - Me 52: IGM: Negative: 18 + 23-25 - 28 - 30 - 31 - 34 - 39 - 41 IND 45 - 58 - 66 - 83-93 - IGG: Negative: 18 - 23-25 - 28 - 30 - 31 IND 34 - 39 IND 41 ++ 45 - 58 ++ 66 - 83-93 - DS 19, no antibiotics: IGM: Igenex Positive 18 - 23-25 - 28 - 30 - 31 ++ 34 + 39 IND 41 + 45 - 58 - 66 + 83-93 IND IGG: Negative 18 - 23-25 - 28 - 30 - 31 IND 34 - 39 IND 41 +++ 45 - 58 + 66 - 83-93 - DD 16, 1+ years antibiotics: IGM: Igenex Positive 18 ++ 23-25 - 28 - 30 + 31 IND 34 + 39 IND 41 + 45 - 58 + 66 - 83-93 + IGG: Negative 18 - 23-25 - 28 - 30 - 31 IND 34 - 39 IND 41 ++ 45 - 58 - 66 - 83-93 -

My DD16 also does not tolerate NAC but does very well on Bactrim. She also had issues with SAMe when we tried it and has always had an aversion to sulfur veggies like broccoli and cabbage. I'm looking forward to our genetic testing results. These links may or not be helpful regarding the CBS mutations but they seem interesting enough to share. They are way over my head but there's a lot of buzz words mentioned. I got to the first link searching for an unrelated topic about how cancer treatment with high-dose methotrexate depletes folate even further in people with the MTHFR defect and Non-Hodgkin Lymphoma http://www.ncbi.nlm.nih.gov/pubmed/23488607. My brother in law has the lymphoma but we do not know about the MTHFR defect In this link http://www.mthfrsupport.com/1/post/2013/03/why-are-genetics-important-when-you-are-diagnosed-with-the-boob-bug-aka-cancer.html the patient discussed has the MTHFR A1298A defect but also several CBS mutations. This 2008 book is linked in the article http://books.google.com/books/about/The_Effect_of_Over_Expression_of_Human_C.html?id=13r8J_QMXH4C but it appears that it is more of a paper because the book links don't work. It discusses mutations of the CBS gene and others that are involved in the making of the hCBS (human cystathionine beta-synthase) enzyme and L-Cysteine, glutathione, and the transsulfuration pathway. In regards to the hCBS enzyme, Belew, the author says "that there are more than 100 naturally-occurring missense mutations affecting the catalytic activity of this enzyme". This paper references Belew http://microarray.host.sk/files/PEPR266K.pdf and talks about the P5P form of vit. B6 and CBS and the mutations. This paper doesn't point out specific CBS mutations but explains a lot of the transsulfuration pathway and other mutations. The abstract is written quite well and is easy to understand and I want to experiment on the high protein vs low protein diet to see if it helps http://link.springer.com/article/10.1007/s10545-009-9006-9 but the full paper is very technical http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2901774/.

If you've ever gone to the Heartfixer's Nutrigenomics Methyl Cycle page: http://www.heartfixer.com/AMRI-Nutrigenomics.htm You would have noticed the page title at the top and a link that says 'Return to Autism Page' but you get a page not found error when you click it. It's still in archive.org from 2009: http://web.archive.org/web/20090213144855/http://heartfixer.com/AMRI-Outcomes-Non-CV-Autism.htm This topic is apropos: Toxicity + Genetic Susceptibility + Infection = Autism - a Perfect Storm in Your Child's Mind There is also a Neurological and Psychological Disorders page that is mostly about metal toxicity: http://web.archive.org/web/20090106113412/http://www.heartfixer.com/AMRI-Outcomes-Non-CV-Neuropsych.htm

Sorry for adding another off track post. LLM, I hope you give us more of your methylation and genetic words of wisdom soon. My chronic Lyme and C1298A mutation induced OCD is making me add some details on the testing in hopes to help a fellow harried parent when they read through our posts looking for help in the future. It is my understanding that when the 23andMe genome test was fresh on the market in 2007, the price was $999.00 back then so maybe Allie forgot to add the extra 9. The price was later reduced to $299 and just this past December 2012 the price was reduced to its current $99 price. The price of Amy Yasko's Nutrigenomic test is currently $495. I've had one in-network LLMD charge me $130 out of pocket for each of my kids for only the MTHFR (677T and C1298A) blood draw test saying that Blue Cross will not pay for it and I've had another in-network LLMD include it in a Blue Cross paid for battery of tests. While it was nice to know whether or not we have the MTHFR mutation, it is obviously preferable to instead have all the mutations and issues the non-doctor self saliva submitted 23andme test will provide for $99. I wish I would have known this choice before. When we found out that both our kids had a single C1298A defect we presumed it was from my husband because after 30 years of marriage, he is the one who has been more psych challenged. When we later found I was the one who had the defect, we thought we may have more genetic issues and sent away for both the 23andMe and Yasko tests for the four of us since our congenital Lyme DS19 has mild ASD that I'm hoping the details of the tests will help us sort out and supplement correctly and our DS16's OCD is debilitating. We are still waiting for the results. There is so little info on what to do with the C1298A defect that I'm hoping Yasko's recommendations will help. Contrary to what I've read about the C1298A and folate, my son's depression has lifted significantly on 7.5mgs of the expensive Deplin brand prescription L-methylfolate a day. His Dr. insisted he try it and it has really helped even though it is mostly recommended for the 677T defect. Although he had stopped taking it a couple years ago, my son was on 20mg of Prozac a day for about 6 years and it never helped him. I, along with most parents first cut out the junk in our kids diets and lives and it does help to a degree but when the methylation pathway is not working the way it should, our PANS kid's immune systems and neurotransmitter production will also not work correctly which a lot of us parents have gratefully discovered thanks to great parents like LLM who share their knowledge with us. As far as genetic mutations go, I don't think we can "change the mapping through a good organic diet, sunlight, walking ( notice no heavy duty extremes) Filtered water, some supplements,lots of rest and mindfulness living", unless those supplements specifically target and correct the inefficiencies the genetic mutations have created. But I don't think we will know which supplements are needed unless something like the $99 23andMe or the $495 Amy Yasko Nutrigenomic genetic/methylation pathway tests are done.

How was your appointment with Dr. Bhakta? We have never seen her but have been thinking about it.

This is amazing. We have recently suspected TMJ problems with my DD16. She has had teeth grinding /bruxism at night when she is sleeping since she first got molars. It is the kind that is so loud you can hear it down the hall. I've read recently that bruxism can cause TMJ injury and the TMJ injury can cause movement disorders but was unaware of the OCD aspect which is a very big symptom for her. She got braces when she was 12 and when they came off 2 1/2 years later the ortho gave her a combo mouth guard retainer to help protect her molars and her head tics started a couple months later. The vocal tics started a couple months after that. When putting on her retainers before bed she goes through exorcist type head movements with her arms flapping and legs hopping for up to 30 minutes and after a neurologist saw a video of it with her eyes rolling all the way back she ordered an MRI and EEG for seizures which were negative. She's had the OCD since she was very young and it is now tied in with her fear that if she doesn't wear the retainer mouth guard she'll wear her molars completely down so it is unfortunately a compulsive mandatory nightly ritual to put the retainer on. I've made an appointment with what appears to be a good TMJ dentist and will report back our findings. Maybe this should be a new post/thread? I recently read from MichaelTampa that the Lyme spirochetes love to eat joint tissue and TMJ is a joint. http://www.latitudes.org/forums/index.php?showtopic=18122&st=0&p=143970&hl=tmj&fromsearch=1entry143970 That would explain my DD16's bruxism at such an early age from her congenital Lyme taking up shop in her jaw joint. Though we have also suspected parasites but the tests including the $400 Metametrix GI Effects stool test came back negative. She has never had any jaw pain or molar pain, just the crazy molar grinding. After less than a year she shredded the molar parts of her plastic retainer mouthguards and the ortho cut the molar part off the bottom one and gave her a new big, thick rubber one for the top. I think that made things even worse. Adding a clarification about the word 'mouthguards'. My daughter's mouthguard is a full plastic retainer that looks exactly like custom made teeth bleaching trays that was intended to cover her molars to protect them from grinding as well as to prevent her teeth from shifting. I think the TMJ mouthguard that lymemom is referring to is an orthotic type device that is custom made by a TMJ dentist to correct/fix a problem with your TMJ. There's a lot of info from Drs Sims and Stack about this kind of device like in this article: http://www.tmjstack.com/casereport.pdf

We get the chemtrails where I live in California a lot. Contrails stay about the same length across the sky as the frozen exhaust from the airplane dissipates. The chemtrails just sit there and the length stays the same all day long and they slowly spread out and start to look like clouds. There can also be several stacked on top of each other or bisecting each other and they are in angles that a contrail producing kind of jet would not fly. We live very close to Point Mugu which is a Naval base and I suspect based on the way ours look that they are are also being shot from there as some sort of missile type thing because there are so many in the sky at the same time. I have taken a lot of pictures of them. Our glass patio table has this grainy, grey dust on it all the time and I keep thinking I should get it tested to see if it is indeed aluminum dust. There are sad stories about Mt. Shasta up north having very high aluminum levels in the snow and hikers getting sick drinking the water from its creeks. I haven't looked at the links previous posters have given so I'm sorry if I'm repeating something but I did look into it awhile back because seeing them in the clear blue sky was disturbing that I had to know what it was. I read that the aluminum is being put in the air to help create clouds and rain and also to control global warming. Not sure if that is true though but sounds like something the government would want to experiment with. I also read that there are no regulations about what can be emitted into the sky so anyone could fly a plane and dump stuff. Very sad world we live in.

Have you contacted St. Jude's in Memphis? Here is their infectious diseases page: http://www.stjude.org/stjude/v/index.jsp?vgnextoid=187b6f9523e70110VgnVCM1000001e0215acRCRD&vgnextchannel=aba413c016118010VgnVCM1000000e2015acRCRD It has the department chair's email and says it is the preferred contact method. I would summarize everything and send it to her and see what they say. Maybe not mention PANDAS, PANS, Lyme, possible diagnoses, etc. Just explain all the symptoms, etc. and hopefully they will have you bring your daughter in for an evaluation.

In 1922, Dr. Cotton said: ‘That the children of the present generation are having their infected tonsils enucleated, will, we believe have a definite influence on the elimination of systemic and mental disorders later in life.’ H A Cotton, 1922 Dr. Cotton also said: The so called functional psychoses we believe today to be due to a combination of many factors, but the most constant one is the intra-cerebral, bio-chemical cellular disturbance arising from circulating toxins originating in chronic foci of infection, situated anywhere in the body, associated probably with secondary disturbance of the endocrine system. Instead of considering the psychosis as a disease entity, it should be considered as a symptom, and often a terminal symptom of a long continued masked infection, the toxaemia of which acts directly on the brain. A summarization of his research: Dr Cotton identified infection of the teeth and tonsils as the most important foci to be considered, but the stomach and, in female patients, the cervix could also be sources of infection responsible, according to Dr Cotton’s theory, for the mental condition of the patient. The logical treatment for the mentally ill resulting from Dr Cotton’s theory was surgical elimination of the chronically infected tissue, all infected teeth and tonsils certainly and, for many patients, colectomies. Additionally female patients might require enucleation of the cervix, or in some cases complete removal of fallopian tubes and ovaries. Such treatment was, according to Dr Cotton, enormously successful; out of 1400 patients treated, only 42 needing to remain in hospital. http://www.drugs.am/upload/Clinical%20trials%20in%20psychiatry%20Brian%20S.%20Everitt%3B%20Simon%20Wessely%202008_1243920601843.pdf Search for ‘tonsils’. More recently, Dr. Klinghardt has said: If the patient is 22 years old or younger, miracles occur from having the tonsils removed. Strep is often living in the tonsils. It may lead to attacks against the joints and myelin even if the tonsils do not have pus. (changed, editor didn't like the real word) Cryotherapy in Germany may be useful. When kids have the dance of St Vitus, think tonsils. Compulsive behavior can be related to tonsils. http://www.klinghardtacademy.com/images/stories/Lyme_Disease/beyond_lyme_notes.pdf He also says: The tonsils are the beginning of the GALT (Gut-associated lymphoid tissue) which is 80% of the immune system. The tonsils program the entire system. Some may have had their tonsils removed but can still have problems. Microbes live in the tonsils and tell the lymph that the bugs are not a threat. You then end up with cross-reactions like PANDAS (now PANS) or in adults joint and cardiac Lyme. The immune reactions go away when you deal with the tonsil issue. Sinus, nose, tonsils are all the same tissue and must all be considered. http://www.betterhealthguy.com/joomla/blog/264-physicians-round-table-2012 Dr. Klinghardt says this on page 46 of his 2010 Treating Lyme PDF: Chronically infected tonsils are often a major contributing problem in brain inflammation/autism/ autoimmunity The anatomic position of the adenoids and tonsils (directly in the Lymph waterways leading out of the brain) gives them a powerful role. They often are infected or scarred up and create a bottleneck with back-up into the brain Degenerated tonsils often house multiple bacterial and viral colonies and produce potent brain neurotoxins: use Quintessense (BioPure) and neuraltherapy (procaine injection) PANDAS: Strep related brain autoimmunity symptoms in autism: verbal stims, repetitive, ritualistic, obsessive- compulsive Be prepared that currently ENT doctors often do not believe that tonsil infections are problematic – and resist performing a tonsillectomy http://www.klinghardtacademy.com/images/stories/powerpoints/treatinglyme%202010.pdf More Klinghardt and tonsils: http://www.klinghardtacademy.com/Articles/The-Tonsils-and-Their-Role-in-Health-and-Chronic-Illness.html

How much azith are you giving your daughter? It's sad how Dr.'s will give our kids Zyprexa and Abilify by the boatload indefinitely but tell us to give antibiotics every other day for a short time. My daughter had horrible rages from what we suspect is bartonella and they never subsided until she started combination antibiotics which Dr. Burrascano recommends: http://www.lymenet.org/BurrGuide200810.pdf Her rages stopped on a combo of aztihromycin and bactrim DS which is sulfamethoxazole and trimethoprim. In an attempt to keep from taking her to a psych hospital, I had read this and tried it: Other recent clinical experience has shown that Zithromax, which should have activity against Bartonella species, does not work here by itself. BUT, the combination of Zithromax with Bactrim has shown success in suppressing the small gram negative bacteria. http://lymemd.blogspot.com/2009/04/bartonella-first-lyme-second.html I had both azith and bactrim available and we were lucky in that there was a very noticeable improvement in a couple days and remission of the rages in a couple weeks. From what I've read, Rifampin/Rifampicin is considered the best antibiotic for bartonella but it should never be taken alone or else the bart will build up resistance to it. Bartonella can be found in fleas, ticks, biting flies, mosquitoes, lice, mites, and chiggers. http://www.betterhealthguy.com/joomla/blog/264-physicians-round-table-2012

Hi Brink, Last month, my 15 DD and 18 DS were recently diagnosed with Lyme and co-infections. Like yours, a year ago my son was diagnosed with slight Aspergers too. My daughter has the tics, OCD, and rages. The doctor thinks that their Lyme is congenital and I have tested positive. Bartonella is the co-infection that causes the most psych symptoms and includes the rages. After two weeks on bactrim and azithromycin that was started at the beginning of December, my daughter's rages which were so bad that the neighbors called the police because she was screaming so loud and for so long and we wanted to commit her to a psych hospital, stopped and haven’t returned. I put her on that combo in desperation before the Lyme tests came back and it was what I had available in the medicine cabinet. Our Dr. later told me that bactrim targets bartonella. She is now on rifampin which is better for bart. So I thought I'd share my experience with you. I know what it is like to not know what is wrong and every doctor you see sends you to the psychiatrist for psych meds which don't work. I have found that this article does a good job at explaining Lyme and the symptoms. The funny thing about bartonella is that fleas, sand flies, and mosquitoes also carry it as well as ticks and there are 8 species known to infect humans. The tests available are expensive and aren't that accurate so it is helpful to find an LLMD who can make a clinical diagnosis. Here is the link to the full article: http://naturalnutmeg.com/?p=1677 Here is a part of the article that discusses the symptoms in children. Note the sentence where it says that they may be misdiagnosed with autism. Are the symptoms of Lyme disease in children the same as they are in adults? No. Most frequently the symptoms of Lyme disease in children look quite a bit different than in adults. Children under the age of 15 account for 25% of reported cases of Lyme disease. While some children present with the more common features of Lyme disease in adults many of them present in ways that are much different than adults. Many children develop sleep problems, including nightmares. New onset bedwetting may also develop. Daytime urinary frequency is often seen. Some children present with odd skin sensations, others with discomfort when being touched. They often complain of headaches that can range from mild to debilitating. Commonly, children present with isolated neuropsychiatric and gastrointestinal changes. This makes the diagnosis of Lyme disease in children more challenging as well as more crucial. Neuropsychiatric changes can range from mild to downright scary to parents and teachers. Children may experience acute changes in personality, abrupt behavioral changes, uncharacteristic outbursts, and trouble tolerating their normal environment. Some children have outbursts of rage; this is often directed at one family member or schoolmate. Children may also have problems with speech and motor skills leading to rapidly declining grades. Difficulty in processing auditory input or changes in the ability to focus with the eyes often appears as a lack of focus leading a child to be misdiagnosed with attention deficit hyperactivity disorder (ADHD). Some children with Lyme disease develop problems with sensory integration and have a difficult time focusing when they are exposed to multiple stimuli at once. This leads to confusion and, in turn, poor behavior. Happy children may become irritable and sad. Children may have an abrupt change in their mood to the point they are depressed, anxious, psychotic, and even suicidal. If this is the case, it is important to consider Lyme disease as well as co-infection with Bartonella henselae. Some previously outgoing and gregarious children become withdrawn or reluctant to play. Children may develop odd, repetitive behaviors and/or tics. When several of these symptoms are seen in the same child, they may be misdiagnosed with autism. Children and adolescents often exhibit Lyme disease symptoms in the GI tract. These include abdominal pain, heartburn, nausea, vomiting, diarrhea and blood in the stool. Gastrointestinal Lyme disease may mimic colitis or Crohn’s disease. Small intestinal bacteria overgrowth may be present. H. pylori are frequently resistant to treatment if Lyme disease is also present in the GI tract. Good Luck!

The Marshall Protocol scientists believe that: Molecular biology suggests that low levels of 25-D are a result rather than a cause of the autoimmune disease process and their research shows that in autoimmune disease, 25-D levels are naturally down-regulated in response to Vitamin D receptor dysregulation by chronic pathogens. Under such circumstances, supplementation with extra vitamin D is not only counterproductive but harmful, as it slows the ability of the immune system to deal with such bacteria. http://autoimmunityresearch.org/transcripts/AR-Albert-VitD.pdf http://www.sciencedaily.com/releases/2009/04/090408164415.htm They also say that the Vitamin D that we supplement is also not a vitamin but it is a secosteroid which may depress inflammation but it is short term and is why you may initially feel better with supplementation but the suppression it does of the immune system is why our PANS kids may feel worse. This Dr.’s site has a good condensed explanation of immune system dysfunction and what they are saying. So if someone has a TH1 inflammatory disease like PANS, then: The vitamin D receptor on the cell membrane regulates the number of immune cells put into circulation. The number of immune cells is vital to the response of the immune system to invaders. The receptor is regulated by various forms of vitamin D. • 1,25 di-hydroxy Vitamin D (1,25 D) is the form which turns the receptor on, thereby increasing the number of macrophages released. Vitamin D receptor activation causes an increase in the synthesis of antimicrobial peptides which can kill bacteria, viruses and other invaders immediately, in an "innate" or "cellular" immune response. • 25-OH Vitamin D (25 D), the form that we commonly take as a supplement or eat in our food, is the form which turns the Vitamin D receptor off, thereby decreasing the number of macrophages released. It often works well, temporarily, if the condition is one of high inflammation. However, 25 D is converted to the 1,25 D form by the kidneys, and by sunlight acting on the 25 D form in the skin, which then turns the receptor back on, thus potentially resulting in increased inflammation in the final analysis. So, is it bad to take a vitamin D supplement? Of course not – if you don't have sarcoidosis or other Th1 autoimmune inflammatory disease. When we measure vitamin D levels, we generally measure 25 D and not 1,25 D because the latter is a more expensive test. If we see low 25 D levels, we think that the body does not have sufficient vitamin D. We may even supplement vitamin D. And it may help for a while, because 25 D turns off the vitamin D receptor, reducing the number of inflammatory macrophages. However, the system will continue to produce 1,25 D spontaneously (and in response to the higher 25 D levels), thus re-stimulating the inflammatory process which we were attempting to treat. If the level of 1,25-dihydroxy vitamin D in the blood is elevated (above 38-45pg/ml), or the 25-hydroxy vitamin-D depressed (below 20 ng/ml) then it is pretty certain that this process is in play. This is the link to the above and at the end of the page this Dr. explains the Marshall Protocol so she supports it: http://www.arizonaadvancedmedicine.com/articles/immune_system_dysfunction.html When my DD had a 25-D level of 19 test result and I first supplemented her with high dose vitamin D she did feel great and said that she "loved vitamin D" but that was short lived so I now tend to agree with not supplementing our immunodepressed kids and to keep that vitamin D receptor on.

Thank you all for your kind words. We live in Thousand Oaks, CA which about 30 miles west of Los Angeles. Just starting to navigate the LLMD waters. There are not a lot of them around here. Our current one is a pulmonary doctor who is just getting into Lyme treatment and does not appear to have a lot of experience. I prefer to not know more than the doctor. We have an appt. with a new LLMD next week and I hope for the best.

Although I’ve been reading this forum for a year, this is my first post. We recently went to a new doctor and I wrote up a summary of my daughter’s condition for him and had some new tests run and I thought the chronology would be good to introduce ourselves and possibly help someone. There’s so many things that we’ve tried that I haven’t written here. I would love to develop a sort of typing of our kid’s symptoms and their reactions to the different kinds of supplements, herbs, antibiotics, diets, psych meds, etc. which would be helpful for us to see trends and guide us in what might work better for our particular type of child. We seem to keep doing the same trials and errors over and over again and so much precious time of our kid’s childhoods is lost in the process. I hope that every affected child in the world is freed of this insidious disease. My daughter was born in 1997. Normal infant and toddler years except she had very loud teeth grinding/bruxism at night when she was sleeping. Dentist noticed molars had wear marks. Received all childhood vaccinations. Doctors would always comment that her lymph nodes and tonsils were enlarged during routine checkups but never did anything about it. Was very sweet and kind until around 3rd grade, 8 yo. OCD starts. 10 yo, she got the TDAP vaccine. OCD increased and hoarding starts. Started getting defiant and oppositional. Would tell me to ‘go die in a hole’ if she didn’t like what I asked her to do. 11 yo, gets braces. Ortho had her on prescription fluoride for about 6 months. Aggression and defiance eases and she is nice and kind again but OCD increases. 13 yo, OCD issues have increased and are bad enough to see a psychiatrist. Started Prozac. Started very loud singing, very often. Extreme separation anxiety and constantly sitting on my lap hugging me and not wanting to get off. She started to develop lymphedema in both of her calves. 14 yo, motor tics started. She can control them at school and out in public but she would explode when she got home. Started Abilify for the tics. Still loud singing. Got braces off. Stopped Abilify which did nothing except gain 30 pounds in two months without an increase in food intake. I see the LeRoy teenagers on the Today show. My daughter is like them. I had read something about the PANDAS connection a couple months earlier but it seemed confusing. I follow their story and am intrigued. My daughter never had diagnosed strep but would often go to sleep at night complaining of a bad sore throat but wake up in the morning and it was better. Went to our Kaiser HMO primary care Dr. to explain daughter’s condition and the possible PANDAS connection. Dr. said Kaiser does not believe in PANDAS but took throat swab and blood strep test. They were negative. They gave her the first dose of the HPV vaccine. Her arm was very sore and she couldn’t raise it for about a week after. Did not get the two follow-up doses. I’m at a loss on what to do. 15 yo, loud singing turned into vocal tics, dog barking and gorilla sounds. She had dilated pupils all the time and she was always complaining she had to urinate too often. She has the PANDAS symptoms. We do one month of Azithromycin. She was much better after two weeks and then slowly got worse again. She said she loved taking the antibiotic because of the way it made her feel. May 2012, she is still getting worse. I call Dr. T. for help. We do lots of blood tests. Mycoplasma pneumonia IGG is off the chart. PANS suspected. Stopped Prozac which did nothing. Did 6 weeks of Clarithromycin. Improvement initially but then symptoms are back to where they were before. Lymphedema much worse. Slim thighs but calves look almost as big and the skin is very tight. September, did one month of Doxycycline. No improvement and got even worse than before it was started, in retrospect the dose was too low. She starts having violent rages. Tried Azithromycin again for two weeks. No improvement. I recorded her whole body complex motor tics and during playback noticed her eyes rolled back a lot. Told Kaiser doc and EEG was ordered and was normal, she didn’t tic during it. After Kaiser neurologist sees tic video, she orders MRI and prescribes clonidine. MRI is normal. Stopped chlonidine after one week, it made her worse. Sophomore year starts and she’s developing major attention issues when doing homework at night and the constant tic’g makes it even harder. It is taking her even longer to do homework, brush teeth, shower, get dressed, eat. Lymphedema is worse. October 2012, did a 5 day steroid burst. So much worse days 6-8. Better than before burst days 10-15 and then the worst ever after. I email Dr. T. and he replies that he is in the midst of the hurricane with no power. November 2012, I had noticed that eating glutamates and wheat really exacerbated her tics and rages so she started a glutamate and wheat free diet for about two weeks and got a little better. Then ate wheat and glutamates for 5 days over the Thanksgiving holiday and she got so much worse that even she noticed how bad it affected her. Started the diet again but this time it is not working as well. Did two weeks of Nystatin with the appropriate diet, no improvement. Started taking fluvoxamine for OCD, Kaiser psychiatrist ordered and it makes my husband happy that she is taking a psych med again. Slight improvement with OCD noticed but tics and attention issues seem worse. Rages are still bad. She says feels like she can never rest or be completely relaxed. She has been picking the skin around her nails during school and her fingers are raw and bloody. She keeps getting a sporadic bumpy rash on her arms and legs that goes away in a day. Bruxism/teeth grinding when sleeping is so bad she shreds her retainers and gets a mouth guard. December 2012, I email Dr. T. to let him know she’s not doing well and that I suspect that maybe even though she has never had any bowel/stomach issues with the antibiotics and she’s always taken probiotics, I suspect possible yeast issues and/or c-diff infection from all the antibiotic use. Dr. T. doesn’t reply. I know I need to call him instead but I don’t. Not sure how I would not sound like a desperate lunatic. I am desperate and search for a non-Kaiser doctor and via a Lyme training site find a local one who is an MD but also does integrative medicine. He examines her and he suspects hookworm or another parasite due to her lymphedema and orders only the Metametrix GI Effects stool panel. I’m concerned about heavy metals and yeast but he is not. The test results will take a few weeks to get and my daughter is not doing well. The OCD I can handle but when my 5’8” 15 year old motor and vocal tics uncontrollably, it breaks my heart. In desperation and after over 2 months without antibiotics, we started azithromycin and bactrim and after 10 days she had a remarkable improvement in her tics and attention span. January 2013, we have normal Blue Cross insurance. Adios Kaiser, I will not miss you. The GI Effects test results are back, only mild yeast. I tell the new Dr. about the antibiotics she started and her initial improvement but after 3 weeks she started backsliding. I also told him that when she was tested back in May for Lyme it was only the ELISA test. He orders the Igenix Western Blot. Last week it came back IGM positive for Lyme and we started Doxy. A good response but not great and added the Bactrim again and much better. Dr. suspects the Bactrim is hitting the co-infections. I also had my 18 yo DS tested and he is positive. I will post his symptoms another time. Both kids have a single C1298A MTHFR mutation. My husband and I will get tested and we have lots of symptoms but I think my kid’s Lyme is most likely congenital. Looking back now there were some infant/toddler symptoms that were overlooked. Igenix IGM is normally chronic Lyme. Before I had kids I pulled more engorged ticks out of my scalp than I can remember. It was a common occurrence in Arkansas. I feel so many emotions right now. Did my kids and are my kids really going through all of this pain because of me? I am glad we have a real PANS diagnosis but after watching Under Our Skin, the road ahead looks bumpy. Hopefully we will find an experienced LLMD in congenital, neurological Lyme. Again, I hope that every affected child in the world is freed of this insidious disease.